Dana’s Story

Dana was born in September of 1998. My pregnancy was normal, with the exception that I was on Progesterone for the first few weeks of pregnancy because of several miscarriages. Delivery was normal and Dana’s weight was 6.3 lbs. Everything seemed fine. As she got a little older, I would look at other infants her age and wonder “Why isn’t she doing that yet”?

Before her 4-month checkup was scheduled, we took her to the pediatrician with some concerns, and she was immediately diagnosed as a floppy infant. A CAT scan of her head was scheduled at the local hospital before going to see a neurologist. After having the scan done and before we even got home that afternoon from the appointment, the doctor had called my husband at work to tell him the results of the scan. We were told that the scan showed her brain was just wasting away and turning to mush–real professional huh? Needless to say, this was very upsetting to us and we thought that our daughter was going to die. We immediately contacted the neurologist and met with him to look at the scan. He explained that there were abnormalities of the white matter of the brain, a much more professional way of putting it. This was the start of many months of every kind of test you could think of. After many negative results, they decided to go ahead with a muscle biopsy and this is when we finally received a diagnosis of Muscular Dystrophy.

Dana now sees a neurologist, Dr. Jerry Mendell, yearly at the Ohio State University Children’s Hospital. This is about a five hour drive from our home. Dr. Mendell is the head doctor at the Neuromuscular Center and one that is working hard to find a cure for MD. He always speaks positive about Dana’s condition. He has told us that as long as she doesn’t regress, and stays stable like she is now, that they will be able to help her with the cure that they are going to find in the future, and I truly believe that one day they will.

Dana also sees several different doctors on a regular basis because of the many illnesses and challenges that she faces each day. She sees a doctor every 6-12 months at the MDA clinic, an orthopedic doctor for her scoliosis in which she wears a back brace nightly to try to prevent surgery, a neurologist for her seizures, and a pulmonologist for her upper respiratory.

I’m told that the number one leading killer of muscular dystrophy is respiratory failure. As a baby, Dana was sick a lot with pneumonia and in the hospital at least twice a year as a result of it. Sometimes, she was hospitalized for up to two weeks at a time. As an infant, Dana slept in a non-invasive ventilating chamber (this was used for polio in the older days) which helped her some, but didn’t completely prevent the pneumonias. It was quite a sight actually when she was in it, her whole body fitting into this chamber with only her head sticking out of it. When we had hospital stays we had to have this with us and believe me, it wasn’t something that you could travel with. Option Care would have to have someone pick it up and deliver it to the hospital for Dana. But thank goodness, those ventilating chamber days are over.

Now that Dana is older and stronger, she doesn’t get sick quite as often. We are more cautious now and know to jump at the smallest illness to prevent it from getting any worse than it is. She now sleeps with a BiPap at night, which helps her take deeper breaths, so she doesn’t have to work as hard at doing so. She also wears a pulse ox while she sleeps (for our piece of mind); this really gives us a heads up if there is anything going on that is unusual for her. When her heart rate is higher than normal during sleep, it usually means that she is getting sick, and we can jump on it quicker. She also uses a suction machine every morning and sometimes during the night. She does this herself clearing out all the junk from her mouth and throat that she couldn’t otherwise cough or spit out on her own.

I think all in all Dana does very well with dealing with her disease. We really try to live a normal life like any other family. She is a very bright & opinionated little girl that has to stay busy doing something all the time. She talks about walking someday when she gets older, driving a car and even getting married someday and having babies. We don’t tell her that she won’t ever do any of these things–who knows she just might! She does struggle and get aggravated because she can’t do things that the other kids can do, like playing on the playground at school, or going up and down the slide. That doesn’t stop her from doing some of the things she enjoys, like being a cheerleader. She will get out there and do the best she can with the cheers and just loves it! She has some pretty special friends at school that are always looking out for her and helping to take care of her. Her friends make sure that she doesn’t get hurt, and assist her with getting things for her at school that she may not be able to do for herself.

Dana has a big brother “Ryan” that (when they aren’t arguing) takes good care of her. They are typical siblings that don’t always get along, but I know he watches over her and loves her very much and is concerned about her at all times.

Overall, Dana is doing very well. She is a normal 10 year old little girl that loves High School Musical, Hannah Montana, & of course the Jonas Brothers. One of her favorite things to do is sing! She is very active in Choir at school and enjoys it very much. She says that one day she might be on American Idol.

I really believe that as long as we can keep Dana’s respiratory system as healthy as possible and keep her seizures under control that she will grow up to be the teacher or doctor that she wants to be. We have to have a lot of faith and never give up hope!

From Dana:

Hi I’m Dana and I wanted to tell a little bit about myself. I am in the fourth grade and I sometimes like it!!!! My homeroom teacher is Ms. Morgan. I have my very own aid named Ms. Vivian. If I do too much writing my hand will get tired and I would have to let my aid write it for me. But I would have to tell her what to write for me. She also helps me in the bathroom.

As my mom said I love to sing and I’m in choir. Sometimes we sing and dance in front of a lot of people. I get nervous about it but I love it so much.

I love to cheer because it is fun even though I can’t stand up and jump in the air like the other cheerleaders do. I even have two trophies for cheering so well. I’ve been cheerleading for 3 years. I am 10 years old now.

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Congenital Muscular Dystrophy

A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

This website is for the discussion of Congenital muscular dystrophy (CMD) research, treatment and care issues. Please note that the ideas posted are the views of the individual, who may or may not be a licensed professional. Please consult with your doctors before implementing any treatment suggested here.